It’s Endometriosis awareness month and I want to give you some information on the common women’s health problem that could be masked by your fibromyalgia…
This post was originally posted on February Stars blog and has been reposted here with their permission.
One in ten women of reproductive age suffers from Endometriosis. The problem is, not all of them know it. Many of them haven’t even heard of it.
It’s a disease in which tissue similar to the Endometrium (the lining of your womb that sheds when you have a period) grows outside the uterus, causing inflammation, pain and fatigue, amongst other symptoms.
It takes an average 7.5 years from the onset of symptoms to get diagnosed.
But when you have a diagnosis of Fibromyalgia, this complicates things further. Any new pain is notched up to “just your Fibromyalgia.”
That “just” can hurt. Fibromyalgia is an intensely painful disease. But Endometriosis is far from just period pain. For some, it can cause widespread month-long pain.
And that is why, for me at least, my Fibromyalgia diagnosis meant my rheumatologist, GP and myself stopped looking for answers when in reality Endometriosis was raging inside of me.
What is Endometriosis?
As I mentioned above, Endometriosis is a disease in which tissue that resembles the lining of the uterus grows elsewhere in the body.
It usually grows in the pelvis but can be found in other places in the body. I myself have it on my diaphragm. It can also, rarely, affect men.
Your body isn’t too keen on this. The Endometriosis directly irritates nerves, creates an inflammatory response, which has wide-ranging effects on your body, and as the tissue around the Endometriosis breaks down and bleeds, your body creates scar tissue called adhesions, which can stick your pelvic organs together.
It can also infiltrate organs like the bowel (another one I have) and the bladder, causing even more problems. The adhesions can also cause issues with any organ they are tying down.
It was originally thought to be caused by the womb’s lining “migrating” to elsewhere in the body, but Endometriosis is actually different to the endometrial tissue found inside your uterus.
In fact, one piece of research found Endometrial cells already implanted outside the womb in female foetuses.
Plus, teenagers can become symptomatic before their periods actually begin.
I was told, when I complained of particular pain and fatigue just before and during my period that this was “normal for Fibromyalgia”.
Two years later when a Gynaecological surgeon saw inside me, he was shocked at how bad it was. I had Endometriosis and adhesions everywhere. I was stage 4, which means the disease was severe.
He said: “I’m really surprised you don’t have more symptoms.”
At that point, realisation dawned on me. I had gone to them complaining of only one, newish, symptom: pain during sex.
But it was not my only symptom. “I do,” I tried to explain. “But I was told it was down to my other illnesses.”
What are the symptoms of Endometriosis?
A lot of the early symptoms of Endometriosis are put up with by women because they are told it is normal to be in pain during your period.
Some discomfort is normal, but women end up putting up with more than a bit of mild pain because they think they have to.
Equally, with Fibromyalgia you may have heard that other women also deal with a lot more pain and fatigue during their period, and so you just notch it up to another symptom of Fibromyalgia.
The Center for Endometriosis has some great information about Endometriosis. I have adapted this symptom list from theirs, which can be found here.
You do not need to have all these symptoms and they are not necessarily limited to the time around your period. They can be chronic in nature.
By the time I was diagnosed, I had constant pain despite stopping my periods using the Progesterone-only pill.
The common symptoms of Endometriosis are:
- Painful menstruation (I find that the pain actually starts before my period does)
- Pelvic pain other than period pain
- Back pain
- Pain during sex
- Pain caused by bowel movements
- Fatigue (For me this got worse the week before and during my period, and then I spent a week recovering from it, so I spent most of the month struggling with extra fatigue).
- Bloating (women often complain of looking pregnant because of this)
- Diarrhea around the time of your period
- Pain during exercise
- Painful pelvic exams
- Pain during urination
- Sciatic pain
I also suffer from pain down the front of my legs and pain in my right shoulder, the latter of which is caused by the Endometriosis on my diaphragm.
How do you get diagnosed?
You may have already gone down the route of investigation, had a Trans-vaginal-ultrasound and told your uterus is healthy and basically, there’s nothing wrong with you.
This by no means rules out Endometriosis. In fact, it rarely shows up on these scans unless you have an obvious Endometrioma, which is a cystic mass caused by Endometriosis.
It makes me very angry how often women are turned away at this stage and told they are fine when they are far from it.
The only sure way to diagnose Endometriosis is by Laparoscopy, which is keyhole surgery to look inside your pelvis.
This sounds drastic and scary I know. I was told by my gynaecologist when I said I wanted to go ahead with the operation that one of the risks was that they might go inside me and find nothing.
I so nearly stopped pursuing diagnosis at this stage. But actually, the operation wasn’t that big a deal.
I’m virtually housebound by ME and Fibromyalgia and I found recovery fairly easy. I know this might not be the same for everyone though.
For me, it was worth it.
What are the treatment options?
This is one of the areas that makes me hate reading about Endometriosis in the media. The information about treatment is so often wrong.
And actually, while the information is out there on how best to treat Endometriosis, it has not been picked up by most of the medical profession (including supposed specialists).
You have to make sure you learn the facts about Endometriosis so you can know when you are being subjected to outdated theories and misinformation.
There is an education group on Facebook called Nancy’s Nook, which was started by Endometriosis advocate Nancy Petersen. This is where you can learn the facts and find the, unfortunately rare, specialists who treat by the most effective methods.
I want to summarise the options for you. But I think I will also need to do some myth busting here too.
- Symptoms can sometimes be managed by hormonal contraceptives. This is a band-aid, it won’t treat the disease, but may give a lot of relief. Unfortunately, it doesn’t work for all women and can stop working as the disease progresses.
- A lot of women are told treatments like Lupron, which causes a medical menopause, will cure their Endometriosis. This is not the case. It can reduce symptoms but does not treat the disease and can have serious long-term side-effects.
- Worryingly, many women are told a hysterectomy will cure their Endometriosis. This is not true.
- Endometriosis is, by definition, a disease that occurs outside of the womb. It creates its own oestrogen, so even if you remove your ovaries, this isn’t going to do anything about Endometriosis that isn’t on the tissue you are removing. However, there is a condition called Adenomyosis, which I am also suspected of having, which causes very similar symptoms.
It is where Endometrial tissue grows inside the muscle wall of the uterus. A hysterectomy does cure Adenomyosis but if you also have Endometriosis, you will need to deal with both.
- Diet is another area that gives some women relief. It, unfortunately, does nothing for me but can be a helpful management tool for some. Women seem to be very individual as to what does and doesn’t help them but things that tend to be cut out are lactose, sugar, gluten and nightshades.
- Excision surgery by a skilled specialist is the Gold standard of treatment. Unfortunately, a lot of surgeons will use ablation.
- Ablation is where they burn off the Endometriosis. The problem with this is that it is very hard to tell if the whole thing has been removed and if the Endometrial tissue is not entirely removed it will continue causing problems and return to its previous state.
In excision surgery, the Endometrial tissue is removed completely.
Think of it like this. You have a garden with a lot of weeds in it. Ablation is like going in with a shovel and hacking off the weeds from the top. You may remove the entire thing but you more than likely will not and it will grow back.
Whereas, excision is more like digging the weed up carefully to get all the roots. This is much more effective.
But you need to see an expert excision surgeon to get the best results.
Many surgeons are not skilled enough to identify Endometriosis in all its forms, and may not look for it in a wide enough area.
Worryingly, women are often being told they had excision surgery but find out when they request their notes that they actually had ablation or a combination of the two.
This is depressing to read I’m sure. But there is good treatment out there. You just have to hunt it down.
The word “cure” is very controversial in the world of Endometriosis. There is no cut and dry cure like the rather drastic one in Adenomyosis.
But the surgeon’s listed in the Nancy’s Nook group have much lower recurrence rates than other surgeons because they are experts at finding and removing it.
There can also be other problems that arise in addition/ because of Endometriosis. Women can develop pelvic floor dysfunction where muscle builds and tightens up because it has been irritated for so long and new adhesions can form after surgery as the body heals.
And conditions like Adenomyosis, which is very hard to diagnose, may also complicate matters.
The experts will know about these things and help you to identify them if pain continues after your Endometriosis is removed.
Unfortunately, many standard specialists will not do this and will leave women in pain because they believe the disease has been adequately treated.
You’ll probably want to know if I’m “cured”. The majority of my Endometriosis has been removed. I still have some on my diaphragm and deep infiltrating endometriosis on my bowel.
These will need the expertise of additional specialists and so the plan is to deal with them at a later date.
But a sudden rise of pain several months after surgery has cemented my specialist’s suspicions that I have Adenomyosis too (the appearance of my uterus was lumpy for someone who is yet to have children) and I probably also have some new adhesions.
So the journey is not a simple one, but hopefully, I will get there eventually.
Why haven’t I heard of Endometriosis?
Good question. The amount of women who suffer from Endometriosis is on a par with the those with diabetes.
Yet I hadn’t even heard of it until my mid-twenties and I didn’t know enough about it to start considering it until I googled what a laparoscopy was used to identify after my gynaecologist suggested it.
When I got diagnosed, I wrote a whole angry post about why I think I was left undiagnosed for so long. In hindsight, I’d had symptoms since my very first period.
One of the issues for me was my Fibromyalgia diagnosis masking my problems.
But I don’t think it was the only issue at play.
A big problem is that I did not go and seek help with my symptoms until they were really bad. There is a certain taboo about talking about periods, which means we don’t learn what is and isn’t normal from our peers.
I knew I had a heavier flow that most of my friends and that was about it. I still have no idea if any of my other friends were up all night clutching their belly in agony the day their period started (luckily that wasn’t the norm for my periods).
Women seem to get it drummed into them at a young age that pain is normal during your period and you have to put up with it.
It is true, to an extent, but when it’s stopping young girls going to their doctors when they are in an abnormal amount of pain, then we need to address the expectation that women have to put up with pain.
Another issue is medical sexism. Donna at February Stars blog wrote a great article about this which outlines all the issues.
But the bottom line is, women’s pain is not taken as seriously as equal pain in men.
I can tell you now, if I was healthy and I got the pain I have experienced with Endometriosis out of the blue, I would be heading straight to the emergency room.
So don’t suffer in silence and don’t suffer unnecessarily. If any of what I’ve written strikes a chord with you, make sure you have your symptoms properly investigated.
This is not a rare disease. There is a one in ten chance, if you are a woman, that you may be suffering from Endometriosis.
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